The Anxiety of Mesh Complications

Every day I either read or listen to women’s mesh complications stories. There are many times I want to leave this all behind me and get on with my own life, doing the creative things I love to do. But walking away from those who suffer alone is not an option because I am so aware of their anxiety.

Hundreds of thousands of women all over the world do not know they have mesh in them and their health has been declining for many years. So when they finally stop listening to all the rhetoric from doctor after doctor and begin searching through Google for answers they are shocked when they first find this blog. Every woman has to figure out how to process it in her own mind before she can make any decisions about her future. That process can be a few months to perhaps years and no one can help her through it.

I have written before than processing the fact that you have mesh complications is huge. At first it is disbelief that you could have a product in your body that is classed as an implant and you never knew it was in you. Next when you get through that stage you will feel betrayal by every doctor you have been to asking for answers why your health continue to decline. You have heard so many answers including the fact that it is all in your head. So your next stage is pure and utter anger at all these people who have made your life far worse than it should have been.

Then there is the issue of trust. You no longer trust anyone. You look at doctors differently as people who do not care about you or your health and you realize health care is a business and the bottom line is profit. Then that takes you down into the depths of despair. Every mesh injured woman has been there before you.

Now you move to the next stage. You will grieve all the losses in your life due to the complications of an implant made of mesh. All the missed family gatherings and passages of life that you could not attend due to so much pain, or you attended hopped up on pain meds to get you through the day. You put a smile on your face so that everyone else can enjoy a good time and the event.

Another stage of grief is that the whole world doesn’t change around you, even though you suffer. Everyone in your household doesn’t get it. They are sick of you complaining about not feeling good. Some women get disrespected
by mothers, children or spouses and sadly for many all of them.

Even those who have loving families often have to face another huge outcry when they decide to go far from home to get the mesh out. They are already beaten down and don’t have the strength to fight so they often cave in to the wishes of others. And yet these same women would go to any length if it was another member of her family who suffered like she has.

Sometimes getting a spouse on board takes so much energy that she will often give up and settle for surgery close to home, only to find out later it was a huge mistake. Then she is beaten down further because she lives in more pain and is often far sicker a few months later.

I want every woman to know I get it. I get what they have to go through and all they have to deal with and I will never make choices for any woman nor turn them away when they realize they have to find a way to get passed it and make another huge decision. One they couldn’t make the first time around.

I know the pressures in your life. I know many of you are single mothers who have to keep a roof over the heads of you and your children. I know many of you worry about losing the career that you fought so hard for, if you take time off from work. I have heard every story possible in the last four years and I have cried many tears with women while they struggle through the anxiety of mesh complications.

It is because I know all this that I keep fighting to raise a red flag on mesh. I don’t expect to remove it from the market. My goals are simple. To get doctors to retrain from doctors who have the skills to fix most women without using mesh. To make sure every woman knows what true informed consent is, with everything in writing long before her female surgery so that she can search for a doctor who does know how to do this. Or she makes an informed decision and takes a chance that it won’t happen to her.

I know this will probably be a ten year battle and it will use up a great deal of my energy, but I cannot see any other way than to keep writing.

The sad part is while doing this I am made aware of all the factions out there who stand to profit by making sure women continue to be injured by mesh. That doctors are putting it in far faster than it can be removed by the few doctors who have the experience and talent to remove it. I am also aware that there are people who want to jump on the band wagon of fame seeking, and in doing so their lack of knowledge will injure more women rather than help them. I also know that some women will use others for financial gain. I would say they will have to live with their conscience but I know you couldn’t do this to other women if you had one.

Before mesh was placed in my body I didn’t understand the pain it could cause me and the stress I would be under while it was in my body. I didn’t understand what it was like to self cath until I had to do it. Until it was removed, I didn’t understand what it would feel like nor what new complications could occur. I was one of the unlucky ones. Thankfully many women have the mesh removed and they do not need more surgery. Until I had fascia surgery I didn’t understand how it would work and what it would entail. Until I took so many types of antibiotics I didn’t understand which ones would cause me great complications. With every year of writing about other women’s issues and my own I have gained new perspective┬á on all this entails. Mental and physical health issues. Family and financial consequences of a little product they call mesh.

These little products have huge dire consequences to women’s lives. That is the legacy of mesh and I do understand what you are going through as you try to make your way through all these decisions that feel like everyone is in a mine field about to explode on you. I understand and I empathize with every decision you have to make.

16 Comments

  1. DebC

    Thank you Linda. Another great post, and demonstration of how much you DO get it, and DO care. I, for one, am so thankful you do, and for this blog. You were a huge part of the reason I was able to get good help as soon as I did, and that I’m doing better (not great, but sui much better) today.

    Reply
    1. lavalinda

      Thank you deb. It often takes a couple of years to begin feeling great. It’s also a lot to do with keeping a positive attitude. That in itself is a lot of self work.

      Reply
  2. Betty

    Thank you so much for your comments, bout sums it up.

    Reply
    1. lavalinda

      Yes and I hope your family will read it Betty.

      Reply
      1. Haydie

        My experience with having a TVT Sling, I went to my gyn for regular checkups and I mentioned to him that I had very little drops of urine when sneezing or laughing! He referred me to one of his college Colleagus, a urogyn, This doctor did not show me what he was going to place nor ever said the word implant. He assure me that it was going to be a 15 min outpatient procedure and then I will go home. This happened on a Friday! When the nurses took me out of the surgery room to the recovery room! I was in extreme pain and when the nurses attempted to have me go to the bathroom, I began yelling from pain, I was not able to release urine. The nurses kept calling the doctor who never had the oddacity to come and see me after the surgery. The nurses took it upon themselves to send me home with catheras. That happened on Friday. On sunday I called the dr to tell him I was not well. He did not pick up and no answering service. I left messages and no answer. On Monday morning my husband took me to his office and he was not there and I begged the nurses that I needed to see the doctor. I was there at 10:00 and he showed up about 2:00pm! He proceeded to tell us that I fell into the 15% percentile of complications. He empty my bladder gave me meds and went home. A couple of days later I had retention again. I began getting serious UTI infections he would prescribed antibotics that in turn would give me yeast infection. This Doctor knew that I was in the process of moving from New Jersey to Florida! The situation is worst now and I am seeing a Doctor in Florida and I asked if he can remove this device and he says he does not recommend it because things can get worst! I am in a catch 22 situation! Please advice me! God Bless all of us!

        Reply
        1. lavalinda

          Haydie I am going to put you in touch with someone in Florida who is going to tell you to make an appointment and go out to UCLA. You will hear from me.

          Reply
  3. Lisa

    Your blog led me to ucla almost 2 years ago and I am now completely healed, and I highly recommend them as one of the few hospitals that know how to do FULL removal. (310) 794-0206

    Reply
  4. Jemima Williams

    This is a great article. You have, as always, hit the nail on the head! The stages we go through, the pain and all of the feelings. This is my life and many injured women’s lives. I’m so glad we have people like you to help guide our way through the dark days <3

    Reply
    1. lavalinda

      I know you do a great deal to help others through while suffering so much yourself Jemima. This is a very long road to go down and sometimes no one in our lives completely understand.

      Reply
  5. Sharon

    Linda – i hope you are doing better yourself. You have helped so many. I recognize myself in some of your descriptions. I have made some of those same mistakes (having surgery too close to home, for instance.) Also, when things got really bad, i got so anxious that I shared too much too quickly, and it came back to haunt me. Now i am more invisible, and in some cases that is good but in others it is not. I admire what you have done and continue to do and wish you much luck and happiness.

    Reply
    1. lavalinda

      Sharon part of the anxiety is the mistakes we feel we made. But they are not our mistakes. The mistake begins by allowing products on the market that can do this to women. We have forgive ourselves for not being given the knowledge in the first place. Then we have to do the best for our own future.

      Reply
  6. Nancy Mikitka

    Once again, Linda, you have written what so many of us feel, but have failed to be able to put into words. Thank You for all that you do!

    Reply
    1. lavalinda

      Nancy I probably would not be able to put all this into words except for the amount of women I have spoken to and understood everything they go through.

      Reply
  7. Susan Thomas

    everything you said is so true, all the feelings, emotions, especially how the family reacts to this seemingly never ending illness. I wish we had support groups in each state so all the women and their loved ones could meet and share and support each other. I wonder often if there are women in my own town who are feeling so alone just like me.
    hug for you Linda, you are my shining beam of hope … ­čÖé

    Reply
    1. lavalinda

      Susan we have to have hope and we have to keep fighting to live. Fear and anxiety is only part of this. You have A future and hope now you are in line to see Dr. Raz.

      Reply
  8. Pam Beauchamp

    Linda, thank you for all the advise and help you give to others. I have learned so much from you, and what a gift you have been. You have been blessed with an ability to write and you share your talent with a tragedy, that many women here share. God bless you.

    Reply

Leave a Comment

Your email address will not be published. Required fields are marked *